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I'm Still Around

CC52
Posts: 103
Joined: Nov 2013

It's been over a year since my last post, so let me reintroduce myself to the new members of the forum. My story is here: https://csn.cancer.org/node/264905.

Cyberknife treatment September 2014. Understandably, I'm thrilled to report continued great numbers as of March 2017, at 64yrs: Ultrasensitive PSA less than .1, testosterone of 400 and Dr. reports a normal DRE. Urinary and sexual function remain at less that pre-CK levels, but hey - we're not getting any younger. Nightime urinary problems have all but vanished, and I'm usually up only once to pee. 

I'm happy to see so many familiar names continuing to support the forum, but of course that happiness is dampened by the new members that have found their way to our community. In spite of your "bad place", know that you have found a good place to share your story and benefit from the varied experience, knowledge and opinion. It can be overwhelming, but sift through it and put it to good use.

Take care my friends!

CC

 

 

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Thanks for popping in. We like to know of the good news. Yours relate to a track of decisions stretching from due investigations, well planned attack and successful outcomes. Will miss your posts one day.

Congratulations,

VG

Old Salt
Posts: 720
Joined: Aug 2014

And any help with the forum is appreciated by all, I am sure.

CC52
Posts: 103
Joined: Nov 2013

Thanks Vasco and OS. Nice of you to reply my friends!

Best - Smile

dakotarunner's picture
dakotarunner
Posts: 101
Joined: Feb 2004

It has been a while since I have posted here. I would like to say I am still alive and kicking after RP sugrery in February of 2004. Numbers were good for a long time, but last check they had built up to the lower 3's. Scan shows hot spots on tip of pubic bone and area in lymph system in my left thigh. I nixed radiation due to lypmhedema in left leg from the RP surgery. Holding off on hormone therapy till I get my next number check. Life is good at 68 and I will beat what ever it throws at me.  Best to everyone in their battle against cancer.

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

RP in 2004 and recurrence diagnosis on 2017 (what is the PSA?). This is a long period of remission deserved of celebrations. I am sorry for the scan's findings. In any case, the hormonal treatment can help you in controlling any advancement of the cancer during a long period. However, radiation could probably eliminate those spots at the pubic bone for good, without interfering with the lymphatic system.

I do not understand why the lymphedema case of 2004 can be prohibitive for a shot at the PCa spots, as you comment. Can you please substantiate your reasoning on such restriction or the relation with your experience back in 2004, after surgery, when diagnosed with secondary lymphedema?

You probably know that PCa surgeries that include dissecting localized lymph nodes can easily cause lymphedema cases. locally or far at the legs. The surgeon cuts the lymphatic system so that our body has no means at the area to clean the debris, leading to inflammation and serious swalling. Once the body recreates the capillary network (and fights inflammation) then things normalize and the swallow decreases. Surely the area is always at risk for edemas for the lack of the lymph nodes. This time your scans (CT/MRI, ?) have identified voluminous nodes but are those specific for cancer? Where are they located exactly? The thigh is not in the traditional PCa travelling route. I wonder if the scan has infact detected nodes with inflammation caused by bacteria but not cancer.

On the other hand, spot radiation can be delivered so precise that it could avoid the lymphatic system at the area. Have you received any opinion from a radiologist regarding the scan results?
When recurrence became apparent after RP doctors recommend SRT that includes a vast field for radiation but your case seems to relate to oligometastases with a fewer number of spots therefore preferable for an assured good outcome (maybe cure).

I believe that you got your reasons to avoid RT, and you should do what you feel better. HT can also be administered intermittently using many drugs in sequential therapy that can lead to many years of quality living. You will need to control bone health and the testosterone to be in command of the problem. I hope you continue to update us of your progress.

Best wishes and luck in your journey.

VGama

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